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Author
Topic: Mirror, Mirror on the Wall . . . (Read 10645 times)

After 17 years of looking at the HIV+ face and body in the mirror, I see a person whom I'm just beginning to recognize. Before HIV I had nice round cheeks, a flat stomach, muscular arms and legs, bright blue eyes and great clear skin. Today the person who stares back at me in the mirror is much different than the person who use to be on the other side. He has sunken cheeks, a large belly, stick legs and arms with little muscle tone, dull blue eyes and skin with a new rash every other day. I'm a survivor. I get up every morning shove a hand full of pills down, pray for no nausea or diarrhea, head off to work. There I have people ask why my belly is so large, my face thin and when I'm seen in shorts, your legs are so skinny in comparison to the rest of your body. Yes to them I must look like some kind of freak. I wear larger clothes to help hide the bumps and bulges. But when I see the person in the mirror I see a hero, a survivor, a person who can fight just about anything.

I hate mirrors these days. Even worse, are photos. The photos some have posted of AMG make me shudder (the ones of me, I mean). I look like a skeleton with a big belly, and my face looks like wax melting off the bones....

But, like you, I am a SURVIVOR. I am trying (but not always succeeding) to love me, just as I am. I also am going to try to take better care of myself, even if I can't afford a gym membership. It is important to stay active. I have lots to see and do yet -- my niece's wedding someday.....maybe she will have children that I'll get to see.....who knows, maybe even some more AMG's.

love,Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

fuck all that. I hate looking like this. I hate the questions. I hate the stares from old friends. I hate not being able to tell everyone that I look like this because I was on oral chemo for 20 years. I admire you for finding a way to get past it,I try something new everyweek and try not to look in the mirror. I am in a really bad mood cause I am in the second week of my latest attempt at a no carb diet. When I lose weight all the humps and bumps just look bigger. fuck it.

I"l try this again, my other post disappeared... Hate that when that happens !

I look back at pictures taken in 2002-2003, and I hate it. I never realised at that time how bad I looked, after loosing 30 pounds, but at least the weight came back on, granted more in the stomach than I care for. I also don't belong to a gym, Ed's been bringing it up on occasion, but I am just not the person to go to a gym. The thing that bothers me most is my eyes. I could sleep solid for 8 hours, wake up, and it looks as though I haven't slept in a week.

Yes, I hear what your saying, but you want to know something, I am at a point , where I don't give a crap, what people think/say anymore. Usually I can just give them the eye, and they will back off ! I am still here, I'm alive...look a little like shit at times, I have good days and bad days, but I am glad to still be in this world. And I decided I am not leaving this world until I see this fucked up mess get better.

hi there, i applaud you.. it takes a lot of courage to live with HIV.. and you are a survivor. But mirrors only reflect back the surface, they don't reflect what's inside, and inside you are beautiful.. you are love itself.. I myself have had hiv for 5 years, and almost died of pneumonia and cmv last year. But I decided that i would start to live and love my life.. I became a life coach and hypnotherapist, with the purpose of finding a way to beat this disease.. people tell me it can't be done.. but then people told edmund hilary he couldn't climb mount everest or roger bannister couldn't run the mile in under 4 mins... besides i have actually spoken to someone in brazil who has been completely healed... it can be done... we just have to find the way... i'm writing a blog, and intend to keep an ongoing journal of my healing journey.... any comments would be warmly appreciated. it's at www.mrpositive.wordpress.com. again, i applaud you

Just a heads up. Statements like "i have actually spoken to someone in brazil who has been completely healed" are likely to get you into deep shit around here Ė regardless of your personal beliefs. You might want to familiarize yourself with the forums you are posting on before proceeding.

hi there, i applaud you.. it takes a lot of courage to live with HIV.. and you are a survivor. But mirrors only reflect back the surface, they don't reflect what's inside, and inside you are beautiful.. you are love itself.. I myself have had hiv for 5 years, and almost died of pneumonia and cmv last year. But I decided that i would start to live and love my life.. I became a life coach and hypnotherapist, with the purpose of finding a way to beat this disease.. people tell me it can't be done.. but then people told edmund hilary he couldn't climb mount everest or roger bannister couldn't run the mile in under 4 mins... besides i have actually spoken to someone in brazil who has been completely healed... it can be done... we just have to find the way... i'm writing a blog, and intend to keep an ongoing journal of my healing journey.... any comments would be warmly appreciated. it's at www.mrpositive.wordpress.com. again, i applaud you

hi danielmark.. please enlighten me.. how, by expressing something positive, and something truthful would i get myself 'into shit around here'I have earned the right to be positive, and if you don't appreciate that then i am very sorry.. what would you rather believe....

besides i have actually spoken to someone in brazil who has been completely healed

Mr Positive,

What is worrying Daniel - and myself - about your comment is that hiv has no cure. The people who claim to be able to "completely heal" aids are charlatans, plain and simple. This person you met will either still have hiv, or they were never actually hiv positive to begin with.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

i have actually spoken to someone in brazil who has been completely healed... it can be done...

He should figure a way to market this miracle and make some money.

Quote

how, by expressing something positive, and something truthful would i get myself 'into shit around here'I have earned the right to be positive, and if you don't appreciate that then i am very sorry.. what would you rather believe....

No, what you are doing is spreading around on this web forum an irresponsible, non-verifiable, scientifically bogus sort of quackery. Care to elaborate on how someone can be "completely healed" from HIV? I swear I'd love to know -- I've been working on it for 15 years and I guess I've just not been able to figure it out.

In your model of the world there is no cure..research the internet, and you'll find more than one story of someone who has healed themselves of an 'incurable' disease.. it all comes down to belief, and faith ,and knowing where to look for the healing. And just look back into history.. there were deadly diseases just as serious as hiv, and then cures were found.. why is it so impossible to think that someone in the world has been healed..

But it looks like i'm in the wrong forum.. i must be naive to think that people would want to be positive..

Iím not questioning your ďrightĒ to be positive. I was trying to alert you to the posting guidelines here, as Ann has expanded on. As to "something truthful" I will say that opinions are not facts, and the medical facts and realities of HIV/AIDS bear more weight with me than any flights of fancy.

Sorry but I cannot agree with your New Ageism. Oh, and welcome to the forums.

hi danielmark.. please enlighten me.. how, by expressing something positive, and something truthful would i get myself 'into shit around here'I have earned the right to be positive, and if you don't appreciate that then i am very sorry.. what would you rather believe....

why is it so impossible to think that someone in the world has been healed..

People have been healed, but not of hiv. Every single case that's ever come to light has been discredited. If you want to risk your life and health to some charlatan in Brazil, that's your call. However, you will not be allowed to advocate quack cures on this website.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

why is it so impossible to think that someone in the world has been healed..

People have been healed, but not of hiv. Every single case that's ever come to light has been discredited. If you want to risk your life and health to some charlatan in Brazil, that's your call. However, you will not be allowed to advocate quack cures on this website.

Ann

Although I tend to bridle at the idea of restricting what people write in these forums, however self-promotional, inane, illiterate or silly (not me!) their postings may be, if this individual is trying to hustle a bogus cure to desperate people then I'm with you on this.

Although I tend to bridle at the idea of restricting what people write in these forums, however self-promotional, inane, illiterate or silly (not me!) their postings may be, if this individual is trying to hustle a bogus cure to desperate people then I'm with you on this.

Hi Wish,

We don't like to censor either. While I wouldn't say he was hustling us, he certainly did seem to be advocating this ... um... method of hiv "healing". Please check out the thread he started - and please continue any discussion about "healing" hiv by clicking here.

This thread was originally about body image issues - so pick up where JRE left off. Thanks!

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I hate looking like this. I hate the questions. I hate the stares from old friends. I hate not being able to tell everyone that I look like this because I was on oral chemo for 20 years.

I'm with you on this Jack....hate the stares, hate the questions; hate constantly being told "you look so sad". Hell, my face is so wasted, I look like a scarecrow.....I don't think people mean to be rude, but they surely can be.

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Alan, you look pretty good in your pictures but pics dont always show everything. I go through periods of feeling like I am breaking out of it but than I always seem to end up back at square one after a look in the mirror. Maybe my life would improve if I took down all the mirrors in my house. I love vanity. Its like a cruel joke, now I have prevista,which I consider a true miracle,I feel great but I fear reactions to my appearance. Stupid,huh. I sure have a lot more compassion and empathy for anyone who is overweight or has noticeable physical problems. When I used to see an overweight person I used to think, "man,is that person fat or how does some one let this happen to them" , but now I know physical appearance is often out of the individuals control.

I'm with you on this Jack....hate the stares, hate the questions; hate constantly being told "you look so sad". Hell, my face is so wasted, I look like a scarecrow.....I don't think people mean to be rude, but they surely can be.

I had to check out your pictures again Alan just to make sure I knew who you were talking about. From one ol' queen to another, I think you look great and take a fine photo. I can relate though cuz I hate being photographed.

I suppose I don't look TOO bad, considering all I have been through. But like Jack says, it sure would be nice to know what we might look like WITHOUT the effects of HIV and meds....

Jack, my friend Kevin has a lot of your same problems....and he feels the same as you do, he rarely leaves his house. His neck is huge, he has a buffalo hump, parotid glands are huge, and he has these weird fatty humps on the back of his head.

It's a cruel disease, no doubt about it.

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

thats me. the fat bumps on the back of the head are very weird.I am the only person in my family with a double chin,let alone my huge one so when we take a family pic its very distressing. I wish I could wear a before Picture. I guess we are living though,right? I guess I would rather have all this shit than going back to the days of sitting in a Drs. waiting room when everyone around you looked like they were history.Another way of looking at it, my appearance is its another method of safe sex. No one, I mean no one is gonna have sex with someone who looks like me. Its always good to have a few extra excuses why you cant get laid.

When I wrote the original post a few days back, I felt down about how much my body has changed with HIV. I don't feel as sexy as I use to, I feel as if I let my partner down in the bedroom by not looking fit. This week I flew up north to visit my dad who was in the hospital. My mother mentioned to me after leaving the hospital after a visit that I should start wearing long pant because my legs are so skinny and I look disproportionate. Needless to say the rest of the weekend did not go to well with her and I. You kind of expect some people to stare and make comments due to ignorance or fear, but when family does it, it brings more hurt feelings, depression and shame that I can bear. Thanks mom for being as ass.

Geez, does your mother know about your HIV and made that comment? I would have read her.

I can write off comments from people who don't know any better because they don't know about my health -- they're just clueless. A friend of mine made a comment like "what's up with the belly?" back in May and I had to give him a lecture of lipoatrophy. He knew about it in my face, but just thought I was eating a lot of donuts with my stomach protrusion.

I make it a point to educate people now and I don't get angry about it anymore. Sure, lipo in and of itself gets me down often but I feel with other people it's always said out of sheer ignorance not out of lack of empathy.

I remember when I had the skin and bones thing going, I have some pics of me in shorts and man I look like I was on a day pass from a prison camp. I dont know how you get past the comments and stuff. If it helps any,its all I hear from my parents everytime I see them,they dont know I am pos. Its sad cause its to the point where I dont wanna see them. My two favorite comments from friends I hadnt seen i a while were, "what the fuck happened to your face" and "you look like you have aids". Back in the day I was the person who gave everyone shit about any weight problems or stuff so I guess its coming back to haunt me. I was at a dinner party one night and we were sitting at tables with 4 couples per table. An old friend came by and went on and on about how fat I was and about how disgusting my triple chin was. It was a very bad scene and ended any public appearances by yours truly for at least a year. He was just fucking with me and had no idea about the cause of my hideousness.I actually made an appearance in the locker room at my old country club where all my old Friends hang and drink. It was a disaster. Everyone was asking what was wrong with my face and why I looked so fat. I havent been back. That was 9 years ago.

Well, I should clarify my comment up above: I certainly am only giving lipo lessons to people that know of my HIV, meaning all of my close friends -- they all know. As far as what I would term acquaintances I will say one of the reasons I moved to Philadelphia from NYC (the primary one was to save money) was to get away from those situations, the ones where you run into someone you know but have not seen in several years. I can only think of one time when someone was said to me, but it was right at the beginning of my lipo before I'd hardly even voiced it to anyone, and an old boyfriend from a decade previous came up to me and asked me "if I was sick" -- and coming from someone gay of course I knew what he meant by "sick." It's a gross, horribly and disgusting feeling.

Here in Philadelphia I know a total of TWO person from my "previous life" and they know all about my lipo and HIV. Only one of them will actually initiate discussions from time to time about the subject of lipo with me, and that doesn't bother me because he does it with empathy. Otherwise I really like the fact that nobody knows what I looked like, as I guess it makes it seem like it's not noticed that much. Though I will say I do see queens that stare sometimes in the gay area of town -- one friend of mine says they're cruising but I always assume they're looking at me and saying "Oh, that poor suffering soul... God please don't allow that to happen to me!"

Newbernswiss, that really sucks what your mother said. I'm not sure how I would deal with that. I know I could not keep my mouth shut. My heart goes out to you.

I did stand my ground with my mom. The sad part when you approach 50 and your mother is in her 70's it's not the time to start trying to change her way of thinking. We have had many ups and more downs through the years on homosexuality, HIV/AIDS, Religion. She is very set in her ways and religion. Her belief and thought is that if she accepts me as being gay, she must reject the teachings of the Bible. For her AIDS is Gods way for our sins of being gay. Is it sad, hell YES. Does it hurt, more than you can imagine. Our parents are suppose to be our safe haven, the one place in the world we can turn to for support, caring, love. When they chose to not be there for you due to their beliefs, (right or wrong) it just adds to the pain. The only good part of this is that I live in a different state so visits are few and far between. After this visit, there probably will be none.

I always thought my mother was an insane nightmare, but she never ever has used any derogatory phrase about homosexuals in my life, nor has my father. I'm really not sure why not -- they're both devout and pious, but when I was growing up straight sexual references were never made in our house either. It was an intensely sexless home.

I should consider myself very lucky with them now though -- I can discuss anything and there are no judgments made, and they love talking about HIV. It's actually a bit surreal.

I was always the "creative" child, and I became exotic once I went to art school and moved to NYC to them. Now I'm like even more exotic -- gay and HIV+ My mother's even told her preacher about it.

I used to be a lean tall gardener in my youth. I'm still ok but a larger mid section and getting leaner legs and 18 months ago had sculptra treatments to fill out my cheeks. That helped the face.

then as some my remember I had carcinoma bumps on my head, radiation treatments for 2 months this summer made those go away but I'm completely bald right on top with hair on the sides. So I had the barber cut it really tight in a crew cut. When I went to visit my parents the last day my mother said "I hope you grow your hair longer because I dont' want family to think anything is wrong" DUH! skin cancer and they all know about it and my HIV. Besides at 53 I'm going salt and pepper, it just doesn't sit well with me to be long hair and shiny bald on top. The men in her retirement home all look untidy with their thin hair kinda messy. I told her I saw more bald men in L A than she did and it's quite acceptable.

Now I know why my sisters would go ballistic when they were younger as she'd say to one, "don't you have too much makeup on, and your skirt hem is too high" and the other "Don't you need a little moore makup and you could loose a few pounds?". Mom's just never happy with things tho says she is.

I'm still determining what I can blame on age or HIV? Apart from a surgery scar under my right armpit that has left me without armpit hair due to radiation treatment for lymphoma, I have a 4" scar on my right forehead after being beaten with a bottle in 1989 thanks to gay hysteria. Both look good on me regardless of initial motive..... PS I could think they are reminders of an ugly situation if I allowed myself to. For those people who "notice" a change or difference in someone elses physique, you have to question where their head is at? I find people like that also tend to use phases like "they all say" or "everyone is doing it".

Does anyone here remember Louise Hay? Back in the mid-1980's, she wrote a book called "You Can Heal Your Life," in which she claimed that physical problems were associated with specific negative emotions, and that if we healed the emotional components, we could also heal the physical conditions. The back of the book contained a long list of physical problems (everything from hangnails, to cancer and AIDS) and the associated emotional patterns that caused each "dis-ease."

It was at the height of the AIDS epidemic in San Francisco, and her lectures and workshops were widely publicized and attended. Perhaps they brought some comfort to the sick and dying.

To me, her philosophy seemed like a variation of blame the victim for not getting well. Not getting better? It's because you're not trying hard enough.

I haven't heard about Louise Hay or her workshops for many years. Maybe because so many of her followers are now dead.

Does anyone here remember Louise Hay? Back in the mid-1980's, she wrote a book called "You Can Heal Your Life," in which she claimed that physical problems were associated with specific negative emotions, and that if we healed the emotional components, we could also heal the physical conditions. The back of the book contained a long list of physical problems (everything from hangnails, to cancer and AIDS) and the associated emotional patterns that caused each "dis-ease."

It was at the height of the AIDS epidemic in San Francisco, and her lectures and workshops were widely publicized and attended. Perhaps they brought some comfort to the sick and dying.

To me, her philosophy seemed like a variation of blame the victim for not getting well. Not getting better? It's because you're not trying hard enough.

I haven't heard about Louise Hay or her workshops for many years. Maybe because so many of her followers are now dead.

AllanQ

Lets try to get the rest of my post up. Three attempts and 15 minutes later.

This was an older article, written by Jack Nichols. Paul Martino (now deceased gave his comments in regards to Louise Hay :

I can think of times that I go shopping and someone I haven't seen in a long time will stop me and say "how far along are you?" I probably look stupid for a minute, as I always have to think of what to say back. I don't ever wear shorts anymore, even when it gets in the 90's here. But, I tested poz in 1989 and so I guess I should be thankful to still be among the living. I am, just wish sometimes I had my 17-year old dancer body (I used to be a stripper). That'll never happen, though. Maybe in my next life.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I can empathize with the self image distress you are living with, sunken cheeks, loss of many physical attributes and I can only say that I agree....it sucks. It is easy for someone to encourage us and offer advice it is what is on the inside that counts but in this society which is based on appearances and physical beauty it sucks to have and have lost. I question every day why I am the only one of my friends left from the 1980's and 1990's that died from AIDS and sometimes I think their choice of giving up on the medications and refusing treatment for PCP or another OI, going on a morphine drip and kissing this world goodbye. And for me the reason I keep going is that I don't want to put my parents through watching their son die, it will happen eventually. but also there are moments when I do experience happiness. I treasure those moments and pray for more..... but it basically sucks wasting away while fighting so hard not to. Good luck to you, your forum has obviously created a lot of discussion and opinions and that is a good thing. You are a fighter and I respect that, my best to you!Ron

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20 years with HIV, 10 years with HCV and still rocking. Do yourselves a favor, do a lot of research on reputable sites, find a multidisciplinary care team, think POZ., no more fun drugs booze, eat well, enjoy good safe sex a lot, and network in forums like this where there some people with knowledge. Otherwise get a health care advocate through your local A.S.O. Smile and be adventurous. Help your peers and my best to you all!